Friday, November 30, 2018

Jessi Cowell

On December 3rd, 2015, Jessi Colwell was merely 33 years old.  The same age I had been when diagnosed.  She had a seizure on this day, at first thinking it was a stroke.  She was immediately taken to Rockdale Medical Center.  The doctor ordered a CT scan and found a mass on her brain.  Wow, this is sounding awfully familiar.

The doctor returned and told Jessi and her family that the hospital was not equipped to handle her situation.  They made calls to Piedmont, Emory & Kennestone Hospitals on her behalf.  Whichever returned the call first was where the ambulance was to take her.  She was terrified.  Piedmont was the first hospital to return the call (still familiar).

She arrived at Piedmont Atlanta late on a Friday night alone.  She wanted her husband home with her son Avery (13 at the time).  Her best friend from middle school and younger sister were waiting in the room for her when she was taken in.  The hospital immediately started her on Keppra for seizures and a few various other medications.  She got very little rest that night, knowing she was on the oncology floor, but not yet knowing why.

The following morning , her neurosurgeon came in and spoke about her options while awaiting brain surgery and gathered her insurance information. 

After a discussion with the neurosurgeon, it was decided it would be best for her to wait there to have the surgery and the neurosurgeon would work her in to his schedule ASAP.  The urgency stemmed from the tumor, benign or not, it had to come out or her seizures would continue until her untimely death.

While waiting for the surgery, she had numerous visitors, phone calls, and text messages.  She also went through physical therapy to help her begin walking with a walker due to weakness on her left side caused by the tumor pressing on her brain.

A few days later she had the brain surgery successfully removing the tumor.  Unfortunately a sliver of the drill bit remained in her skull afterwards.  This was confirmed by a CT scan and was removed the next morning.

Like many newly diagnosed patients, she didn't remember anything about the second surgery.  Pathology and other tests were done which led to the worst conversation she could imagine.  She was given the diagnosis of Stage IV NSCLC.  A few days later, she left the hospital to return to her "new normal".  This was just the beginning of her hard journey. 

She then went trough radiation to the brain as a precaution.  During this time she fell in the shower and broke her collar bone on the left side but was thankful it wasn't her head, which was still slowly healing. 

After learning she had lung cancer, she got her hopes up that part of her lung could be removed to remove the cancer, leaving her cancer free for as long as possible.  She had a PET scan and with her husband, Johnny, she went to meet with a cardio thoracic surgeon at Emory.  This is when she learned the cancer had metastasized not only from the lung to her brain, but also to her lymph nodes and right arm making her an ineligible candidate for surgery.  She was absolutely devastated.  While reeling from this new information, it was decided that she would need to go on conventional chemotherapy.

After having her part placed and two chemo infusions, her oncologist ordered another CT scan which showed progression.  It was at this point she and her husband frankly asked the oncologist how much time she had left.  By this time it was April of 2016 and she was told she had 1.5 - 2.5 year approximately. 

It was at this time she began to get her affairs in order.  She had to prepare for the worst case scenario.  She did her advanced directive, banking paperwork, and let her loved ones know of her final wishes. 

After the chemo failed, she became a candidate for Opdivo, which she has been on ever since and feels like it is saving her life.  She said she knows that when God is ready for her, she will understand that, she just isn't in a hurry to get there.  She has her family to live for. This December 3rd will be her 3 year cancerversary.  And, although she speaks of the experience in first person, she humbly says it was "we" who are enduring this, her family

Jessi and Avery at Relay for Life

Jessi Today

Jessi and Johnny 2001

Jessi, Johnny and Avery 2015

Tuesday, November 27, 2018

Six Years

November 27th, 2012:  I was laying in a hospital bed, recovering from brain surgery to remove a tumor.  I was surrounded by family and friends, each of them with tears in their eyes.  I was groggy and couldn't understand why they were so sad.  No one would tell me.

Finally, the doctor came in.  I demanded to know what was wrong.  Yes, brain tumors run in my family but are always benign.  When he spoke, my world changed forever.  He said, "the tumor was malignant and came from your lungs, you have lung cancer, most likely stage 4."  

I immediately went to google of course, saw the statistics and prognosis and asked him how much time I had left.  He told me everyone was different, but as of that point, he would guess I had 12-18 months to get my affairs in order.  I was going to leave my 7 year old daughter alone in this world.

Well, that was 6 years ago.  And I'm still here, on my first line treatment, with no active cancer.  I am beyond blessed.  I was hopeless back then.  But through the grace of God and the extensive research beginning to uncover mutations like I have, I am still here.  

I was here for her 5th grade graduation, to watch her team win the volleyball championship, watch as she grew so much taller than me and become this teenager, with her own personality, so beautiful and sweet.  God knows I am blessed.  I have been through some struggles, but through the grace of God, I'm here.  I write my blogs, not to brag, but to bring hope.  Because on November 27th, 2012, I had none.  I had less than a 4% chance of surviving 5 years.  But those stats are old.  If I can just give others hope during this incredibly difficult time, then I feel it has all been worth it.  

I know a lot of lc patients are struggling and I've lost many friends to this disease.  So to say I'm overjoyed all of the time is a mistake.  The worst part of my journey has been the loss of these friends.  The emotional toll this disease takes on you is indescribable.  Yes, I take anti-depressants and will forever have a form of PTSD, because I will never be cured as of now.  There is only treatment, no cure.  So, I'm praying for many more years and as I rejoice in this day, I'm also saddened for my lung cancer family that have and continue to take a beating and for the ones no longer with us.  

But, today I'm alive and in these moments, I am going to LIVE.  

Thank you all for your continuous prayers.  Please keep them coming.  I never thought I would see this day, but I'm really glad I did.  Love you all.

Josh and I recreated this fabulous pic of my sister and me on Thanksgiving in high school.

Friday, November 2, 2018

Day 2 Joan Fong - LC Facts by Ron Fong

I have taken the facts that Ron Fong posted about his late wife Joan.  I met the two at a LUNGevity summit.  They both praised me for speaking up about my faith and religion. 

A few months later, I went out to California and saw them at one of the Bonnie Addario Living Room Broadcasts.  It was live, and I was sitting across from them.  They had informed me earlier that Joan would be going to hospice.  Joan didn't look scared, she looked relieved.  When they left in the middle of the broadcast because she wasn't feeling well, I immediately messaged Ron.  I wanted so badly to hug her goodbye.

His response was, "Joan said she'll see you on the other side."  I never saw her again.  So, my blog today is taken straight from Ron's page.  I'm sharing the facts....  Thank you Ron for all you do to continue your advocacy efforts.  I hope you all will share

* Lung cancer is the #1 cancer killer in America. (~160,000)
* Lung cancer kills more than the next 4 deadliest cancers combined.
* Lung cancer is the #1 killer of women and has been since 1987. LC is a women's disease far more than breast cancer.
* Joan Fong died at age 59 after 45 months of diagnosis.
* Lung cancer is a killer.
* 91 people die from opioids.
* 112 dies from breast cancer
* 433 people die from lung cancer
* last year in 2017 November 2 there was a #433aday rally talking about this national emergency, of a B747 full of people dying everyday and what are we doing to solve this?
* Joan Fong never smoked. Yet she got lung cancer.
20% of lung cancer patients never smoked.
40% are former smokers.
Only 40% are current smokers.
* Smoking causes many diseases, not just lung cancer.
* LC can be caused by genetic mutations, radon, pollution & smoking.
* This perception that you did this to yourself because you smoked is a stigma affecting survival.
* If you have lungs, then you can get lung cancer
* What is the early detection of lung cancer?
There really isn't any.
Research needs to find an easy and cheap way to do this.
It's hard to squeeze the lungs to see if there is a lump
* Because there is no early detection, 50% die within one year
Research needs to find early easy affordable detection
* Federal research dollars per death
* Lung Cancer $ ~2 thousand
* Breast Cancer $ ~26 thousand
Yet LC kills 2x the number of BC patients.
* Research Dollars are needed.
5 YEAR survival rates are
* 18% for all stage of lung cancer
* 5% for stage IV advanced metastatic lung cancer
Joan Fong was Stage IV
* 89% for all stages of breast cancer
Survival rates are improving for lung cancer dramatically over the last five years as scientists unravel targeted precision medicine against cancer mutations. Stage IV leaped from 4% survival at 5-years to 5%.
Mutant Joan Fong took targeted medicines. She benefited from research that discovered East Asian female never-smokers have a 60% chance of a targetable mutation (EGFR) that there is a drug for that will kill the bad hombre cells and leave the good hombre cells alone. Chemo kills the good and bad indiscriminately. Research is wonderful.
Immunotherapy, as advertised on TV, is a miracle drug for everyone. It did not work for Joan. Why? It is because research in understanding why I/O works at all is lacking. Be wise and help advocate for LC research.
Joan Fong had an outstanding 45 months of living the life compressed after diagnosis. She outlived the statistics of an 8-month survival. We laughed We loved We lived Rejoicing in the Lord always! and Praising God! (www.caringbridge.org/visit/joanfong for our journey)
Nobody deserves cancer.
There can be no new treatments for survival without research.
There can be no research without funding.
There can be no funding without advocacy.
And there can be no advocacy without awareness.
Help me raise the awareness, and provide hope for survival!
Nobody deserves lung cancer.

So,please, continue your prayers for the families and friends of the 433 that pass away a day from this disease in the United States alone.  And thank you for your continuous prayers for my family and me.  I cannot begin to describe how much they mean.  And Joan, I'll see you on the other side.

The last day I saw Joan